Hi all! I'm brand new to here - about 10 minutes new, as a matter of fact...
For about a year now, my feet have been burning - really, really burning... they feel as though they're on fire! I also have pain in them, although, that pain is more intermittent and not as bad as the burning. I also have what I can only describe as weakness in my lower legs and cramping in them if I do too much - like stand for more than a half hour at a time. I've been using a cane to assist me for about 6 months now, and my burning and aching feet is so bad that it's debilitating...
Ok, a few facts:
I am a type 1 diabetic (for 13 yrs now) - take insulin Novolog - 20 units plus sliding scale 4/day
Lantus - 22 units plus sliding scale 2/day
I have hypothyroidism - take 125 mcg 1/day
High blood pressure - take 80 mg propanolol 1/day
40 mg lisinopril 2/day
High cholesterol - used to take a statin, stopped because of how it made me feel (been off of that for sometime now)
Suffer from migraines - take Fiorcet as needed
I take Lyrica - 200 mg 3/day (Neurontin never worked, and Cymbalta gave me really, really bad headaches)
Was just put on Desyrel (to help me sleep) - 100 mg as needed
Was also just put on Effexor XR (to try and get me out of my depressed slump) - 37.5 mg. - but was told that they may up that at my next appt if I find that it's not helping
I have Lidocane cream and Lidoderm patches - NEITHER has helped my feet and legs feel any better
I'm not overweight, but I'm no longer active either.

My sugars have been quite elevated for some time now, but am working with my endo to try and correct it. I believe that my increasing pain levels have been detrimental in making my glucose levels rise... What a vicious and evil circle I've found myself in...
I no longer work because I can barely walk, but, even while seated, my feet burn and hurt ALL the time, which makes concentrating on anything near impossible.
I've had normal EMG/NCS test (but, from all the research I've done on SFN, I understand that it's normal to have a normal EMG/NCS is you have SFN)
My B-12 was tested and is fine
I have supports in my shoes
I don't drink.
I smoke the occasional marijuana to try and alleviate my pain - sometimes it helps, other times it doesn't...
I have a husband who loves me and supports me and a loving daughter who is almost 12 and is just as sweet as they come...

I have been to a pain management specialist (which took weeks to get into) with absolutely no help/relief from them... My family doctor is a joke.
You see, I'm on medicaid and I have to find dr's within my insurance's plan - and I couldn't afford to see a dr. without my insurance. I am quite poor.


Ok - with all of that out of the way - I need SFN testing done. I live an hour from Philly and an hour (in the other way) to Hershey. I'm willing to travel to either place. I've googled SFN testing with no luck. So, if anyone, out there in cyberspace could help me locate a place that does do the QST or skin biopsy test, I'd be forever grateful...

Thanks in advance for your help and support.

Some of what you list make me think of Metabolic syndrome.
What is your triglyceride #?


[Metabolic syndrome (also referred to as syndrome X or dysmetabolic syndrome) refers to an association between certain metabolic disorders and cardiovascular disease. While the criteria for the diagnosis vary, the concept of a clustering of risks factors that lead to cardiovascular disease is well accepted. ]
http://www.emedicinehealth.com/metab...article_em.htm

[Metabolic syndrome is a cluster of metabolic risk factors that come together in a single individual. These metabolic factors include insulin resistance, hypertension (high blood pressure), cholesterol abnormalities, and an increased risk for clotting. ]
http://www.medicinenet.com/metabolic...me/article.htm


You can probably find quite a few books in your library with diet plans and helpful tips if the Metabolic syndrome information seems to fit for you.

absolute_massage,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

It certainly does seem like you might have a small fiber neuropathy; you certainly have a number of the conditions that can lead to that syndrome.

Given where you live, your best bets are probably both North and South--Johns Hopkins in Baltimore or Cornell-Weill in NYC, both of which are among the leaders in neuropathy research (and can do very advanced testing, such as QSART and skin biopsy).

I would try to get your local doctor (if you have a good enough relationship with him/her) to intercede with you and explain your situation to either (or both) of these institutions; each of them does take a certain number of pro bono patients (and you might be an interesting enough case for that to happen).

Hi. Welcome to Neurotalk.

I have a question to ask you. Do you know your B-12 Level? It should be on one of your blood tests results page.

The reason I ask is that B-12 deficiency can account for much of what you are going through.

The norms that the labs indicate ARE NOT THE NORMS FOR A DIABETIC.

Can't stress this enough.

So if you were told that your B-12 is good, and it's like 400 or so, THAT'S NOT GOOD.

So if you can get back to us with the number, that's a good place to start.

Thanks much

melody

Wow - Didn't even think that there are norms for diabetics and norms for non-diabetics when it came to B-12 levels... Mine was ordered by my endocrinologist, so I'm wondering why he didn't think to tell me that my number -453 - was not normal... In fact, the nurse and the dr. said it was a totally normal number...
Thanks for your input... Gonna mention this to my endo at next appt. and start taking a B-12 supplement...

I'm going to google these places and try to see what I can see.. I am interested in getting answers - no matter how hard I have to work. I've found that even the so called specialists that I see all the time do not know about or how to treat SFN. I'm used to doing my own "leg work" - for the first 10 or so years of being a type 1 diabetic, I didn't have insurance and always had to do things on my own... You'd think that since I finally have insurance, all the "leg work" I had to do before could stop... But, I guess not. I've come to learn a few things. I am my own best advocate. And that I have to take charge of my health... The dr's are there to help somewhat, but for the most part, it's me who has to do it...
Thanks for your reply!

ok - well, I know my triglyceride number is high - I started taking fish oil vitamins to try and counteract that number - the last number was 376 - and that test was done in May of this year...
Never heard of metabolic syndrome, but will do some serious "googling" of it as soon as I'm done replying here... Thanks so much for getting back to me so quickly

I have had a skin biopsy done at North Shore University Hospital on Long Island. I do not know if they do the other tests but am in the process of trying to find out. Have same symptoms with lots of fasticulations, loss of hot and cold, and typical neuropathy symptoms in hands and feet. Have had the skin biopsy done at two different times and two different places. Both came back negative. EMGS etc. all normal. However, am diagnosed with Undifferentiated Tissue Disease. Will try to find some information about North Shore and autonomic testing. My neuro out East told me to go to Mayo Clinic in Minnesotta. They denied me last time I tried to "apply". Will post any info I find. Good Luck...

Don't be put off if your endo does not seem interested in anything to do with B-12. This is the case with MANY physicians. And it even happened to me about 5 years ago. I had just been diagnosed with the beginning of diabetic neuropathy in my toes. When my former podiatrist used some kind of electric file or whatever the heck it was, I nearly jumped out of the chair and I yelled and he yelled and said 'Good Good, you have feeling". I remember saying "What the h do you mean good good?" and he said 'We want lots of feeling' Since my husband has had neuropathy for 20 years I knew all about it. So I IMMEDIATELY went on B-12 (Methyl B-12) and in two weeks the buzzing, the burning, etc. was virtually gone.

Well. one day my husband was at a podiatry appointment. Our regular doctor's partner took over that day and he was working on my husband. Because the other guy regularly gave my husband a free B-12 shot whenever he got his feet worked on, I simply asked this guy if he was giving out shots too.

What was his answer. I will NEVER forget this conversation.

He said "I NEVER give anyone B-12 unless they are anemic, I don't believe in it". I quietly explained about my diabetic neuropathy and how Methyl B-12 helped me TREMENDOUSLY. He still shook his head and said "I don't believe in it". Well guess what happened over one year later?

As my husband is sitting in the chair being worked on by his usual podiatrist, his partner pokes his head in the door and said "Can I have a word with you?" I left the room and he said to me "I have just been diagnosed with diabetic neuropathy and my feet are burning, CAN YOU PLEASE GIVE ME THE INFORMATION ON METHYL B-12"?

See? We CAN educate the professionals sometimes, now can't we??

lol

Take care, Melody